Varsha: What more can those with hidden symptoms do to increase the understanding?
Joanna Wootten, Disability and Inclusion Expert: Well, I think social media is a fantastic tool. If you are into social media it’s great for raising awareness and also raising awareness when things have gone wrong as well as when things have gone well. So do use that.
Use blogging, vlogging, whatever is your medium of choice. But also, just chatting to people, I think is really good. If you are working, do ask for adjustments, but also think about how you want to manage the message, do you want to have control over the message.
In that case it may mean being brave. But, I would recommend rehearsing things. So if you’re thinking, hm, how do I talk about that to my manager, maybe do a rehearsal. Think about if you want to put it in an email, think about how you want to do it, because it’s an important message.
Then think about do you want to share the information with your team, how do you want them to find out, who do you want to tell them. Do you want to give them links to information that you approve of. Because quite frankly, there’s a lot of rubbish on Google, we all know this. So you might want to control this a bit and shove them – in a nice way of course – in the right direction. So I think it is really worth thinking about actually, this is Varsha with MS, this is not Joanna with MS.
Varsha: Okay, yeah.
Joanna Wootten: And think about what do I want them to know and what do I want to emphasise. So, I’m still up for a night out, but just give me a week’s notice so I can think about it, or you need, whatever it is.
Varsha: Like a mini information sheet, and practise what you’re going to say with friends or family, just so that you’re comfortable with what you want to present to people. And you can also get feedback, I guess, from friends and family.
Joanna Wootten: Exactly.
Varsha: And improve on what you want to say.
Joanna Wootten: I know one organisation that I joined, I emailed everybody explaining that I need to have notice of meetings and things. I’m okay one-on-one, but I can’t do groups, and I can’t hear on the phone. So I tend to do it that way, but in a different situation I haven’t done that.
So it does vary a bit, who you’re talking to, who you want to give the message. You could do information sheets, emails, or you can link to other people’s information sheets. I quite like the way they described it, but maybe you don’t agree with everything, point it out, saying this bit’s okay, but this bit is rubbish, ignore it.
This interview is part of a series called ‘Hidden MS’ which is supported by Roche. MS Reporters™ is a Shift.ms production. Roche has had no influence over the content.